MIL lied about genetic condition

We probably both know what we're talking about here. I think the only saving grace is the outcomes can be significantly different for each person.
💐 for you.

Yes everyone in my family is affected differently. Mine is starting to mess with me now. It’s scary. I didn’t have kids in the end.

She absolutely should have warned her son as soon as she knew. So he could perhaps make lifestyle choices, be aware of symptoms and seek help at a very early stage, possibly being able to control and manage the condition better. So OP could have factored that in to her choice re having children. MIL screwed up.

And thank you @Tittat50

However, MIL knew her son was serious about someone one, knew when he got married, knew when they were trying for children and knew when the children were born

She had ample opportunity to tell her son and her DIL before this genetic car crash became a potential multi car pile up

Her son and perhaps her grandchildren are at risk of this condition

We have the CF gene in our family - only found out after a GC was born. I am a carrier (with all the now known carrier symptoms), ditto one of my DDs. We informed my siblings so they could choose what to do for themselves and their offspring. We would not have dreamt of doing otherwise.

It was particularly pertinent for a niece who was at that time planning to start a family - but in fact my brother (her father, who turned out also to be a carrier) decided not to tell her - I thought that was a bad decision but said nowt. In fact she proved to be infertile (which is common among carriers.).

It is a subject fraught with anxiety, but I do think it is best to be open and honest. I would have found it impossible not to be and I think your MIL was very remiss indeed not to pass this information on. She did not need to say that it was her, but just that it is in the family. A difficult situation for you all.

Surely this is information her son should have had when making a decision whether to have a family as it is a hereditary condition?

For some hereditary conditions, genetic counselling and screening is available when trying to have a baby. OP and her DH have been denied that opportunity.

There is literally law stating that the MIL has the right to medical privacy.

That is why alternative processes need to be implemented to protect that legal protection.

Genetic screening should also become more accessible.

The law says otherwise.

Ending a child’s life is a decision for parents not grandparents.

And the law says it is her decision. You can't break laws for ethics. That is why I clearly stated the alternative way to protect her legally held protection while enlisting screening.

ya absolutely nbu. Your MIL has been unbelievably selfish. She could and should have told your DH as soon as he was of an age to understand that he potentially had a genetic condition so that he could get tested (if available), keep an eye out for symptoms, potentially have preventative monitoring/ treatment and make an informed decision via genetic counselling whether to have children himself. I wouid he absolutely livid and would be telling her so, and I think I would find it very hard to have anything to do with your MIL ever again. I have a serious genetic condition and when I was a teenager the implications of it on me and any future children were explained so I was able to make informed decisions. Many people with my condition choose not to have children or have in utero testing. I can’t believe your MIL thought it was ok not to say anything. She’s played roulette with your DC and DH’s health.

They don't talk much in his family do they? Multiple scans/hospital/doctor visits before you had to persuade him to tell his own mother something was wrong?!

The law says otherwise but OP's MIL could have told her son. It was her decision to make, but in my opinion, she made the wrong decision.

The law says otherwise. It is her private medical history. It isn't up for debate as the law protects. That's why alternative ways need to be brought in to protect people.

All those saying it’s her business, yes it is for her, but her condition is genetic, and whilst she only found out when her son was 17 she is absolutely wrong to not say anything to him because it could be passed to her grandchildren who hadn’t even been born at the time she found out. She didn’t have to do it when he was 17 but she should off once he was married or in a serious relationship that could lead to children

Her son has now found out the hard way he has the condition, and has to live with that as well as the fact he could have passed it onto his children, all because she was, in my opinion, very selfish

I would find it very hard to forgive her

Outrageously selfish behaviour by the mother in law. He could have spent the last 20 years creating a lifestyle/diet/plans/career choices that mediated his future symptoms and circumstances. People saying it wasn’t her son’s right to have knowledge about his own future health are terrifying. He could have deliberately worked harder for early retirement! So scary that people can think this is ok 😫

That's really horrible of her.
Your DH could have had the chance to develop a career which wasn't dependent on his physical health (eg no point trsining to a pilot or forklift driver) as he got older.
Also (and I sound the reason why she didn't tell you) he may or may not have chosen to have children.
Very manipulative.

I'm sorry, I can't understand this viewpoint at all.

We found out when my DS2 was born that he had inherited a rare genetic condition from me. I am mainly just a carrier with very few symptoms, whereas he is much more severely affected. We knew nothing about this condition until DS2 was born.

It never ever crossed my mind not to be completely honest with him all his life about his condition and how it was inherited. Why would I want to hide it? It's not a shameful thing, that I have a dodgy gene. He has every right to know exactly how he and any future children will be affected.

OP, I would be furious with MIL as well. If she knew she had a condition that might affect her (future) grandchildren, I cannot understand her not being open about it with you.

I mean my dads just been diagnosed with a type of cancer which is nearly always genetic.

he didn’t know. Me and the kids now have to be tested. I know how you feel though as it’s terrifying. .

@Flossflower do you mean that the decision to have a child should be fully informed by the parents with all the knowledge available?

If so, yes, I can completely understand that.

I can’t see any posts saying it’s okay to the poster above.

How has it never come up before? How is his mum coping with it?

I don’t think calling for her blood is a great idea, yes it’s really selfish of her but not sure cutting her off is a good idea. Are they close? All you can do is move foreward now.

We don’t even know what the condition is.

So, if it's hereditary you think her son had no right to be told that he might be in line for it? You're telling your family when they become young adults, this man didn't even get that and and with it knowledge.

Sorry, but I think OP has the right to be monumentally pissed off.

Maybe she hoped genetic lottery would mean he did not have it? Eg 50-50 chance. So she hoped no need to reveal . Was her decision.

Can you blood test for it?
Is it going to limit life?
Now you do have the information so if a test is available you can decide to test you dp and your dc .
Go see genetic counselling to decide.